Return to HDA home page HDA Message Board
HDA About the HDA HDA What is HD HDA Juvenile HD HDA Children & Young People HDA Professionals HDA Resources HDA Research HDA HDA News HDA Events HDA Contact the HDA HDA Home Page

Outside of office hours if you need someone to speak to you can phone the Samaritans on 116 123


Go Back   HDA Message Board > Message Board Categories > Fundraising, events, summer camps, support groups

Fundraising, events, summer camps, support groups Tell us about your UK fundraising activities and local meetings

Reply
 
Thread Tools Display Modes
Old 24-01-15, 11:11 AM   #231
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Curse in Verse - the poetry of HD

Time for a book plug me thinks

Curse in Verse and Much More Worse

Available HERE

AndHERE (scroll to bottom of page)

And all good bookshops

All reviews welcome.

Sample poem below:

The Corrupted Computer

Introduction

One of the Message Board members (Twamoons) posted up once about some very interesting guidance she was given in relation to her husband, and how the HD brain might work. In essence, the specialist explained the brain was divided into shelves, and all the information we have gathered over the years is filed away on these shelves. She said the HD person just took a little while longer to find which shelf, or part of the shelf, the information they were trying to find was on.

It makes sense... If we were to imagine our brain as a repository, and there are hundreds and thousands of shelves with everything we have ever learnt filed and archived neatly away, we would need some way of retrieving data in milliseconds for recall. Go on to imagine having all our thoughts catalogued and indexed on a super, dooper mega computer, which has super fast automatic grabbers ready to find and retrieve any file we need in an instant. On top of that, you have new experiences and information needing to be catalogued and filed every day.

Then imagine that super dooper computer starts to get corrupted and the programme is getting slower and slower. Chances are, with new files being needed every millisecond (be it a question asked by someone or how do I do something?) the back-log of file requests would probably lead to a log jam. If the person were an organisation, reverting back to good old fashioned manual archiving and retrieving might be used until the computer could be trusted again.

It’s no wonder people with progressive HD sometimes give up on trying to do the most basic of tasks and communication if having to access so many shelves, and with no way of doing it fast enough, means they are put under immense stress!


“Mr Smith, would you like some milk in your tea?”
It’s a simple question she’s asking of me,
But I’m not sure if I should say “no” or say “yes”,
And my cognitive programme’s unable to guess.

So I send off Bert, he’s my man on the train,
To ride down my neurons to that part of brain;
It’s the shelf labelled ‘preference’ but where can it be?
There’s a million and one shelves that Bert can now see.

And the files on the shelves are stacked up so high,
That Bert heads back clueless, he’ll not even try.
And the cup’s handed over, fed up with the wait;
I sip the black tea which both Bert and I HATE.
__________________
I tried.
Trish is offline   Reply With Quote
Old 26-01-15, 07:31 PM   #232
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Curse in Verse - the poetry of HD

My latest blog.

Sadly tomorrow is the 4th anniversary of Steve's sticking up two fingers to HD by going to Heaven.

Can't believe it's been that long, but then again, he's still with me in so many ways bless him.

REACHING FOR THE TEACHING LINKY HERE
__________________
I tried.
Trish is offline   Reply With Quote
Old 27-01-15, 11:51 AM   #233
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Curse in Verse - the poetry of HD

Hi Trish

Thinking of you today....just been reading your latest blog and going through the various links and wonderful poems and photos and sharing in your memories. Your writings are simply marvellous. I love Llandudno...shan't attempt the Gogogoch!!

Good luck with the training course. As for Tipping Point...surely they'd not do such a thing to a dainty little lady like you!!

Regards x
shiraz is offline   Reply With Quote
Old 28-01-15, 07:04 AM   #234
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by shiraz View Post
Hi Trish

Thinking of you today....just been reading your latest blog and going through the various links and wonderful poems and photos and sharing in your memories. Your writings are simply marvellous. I love Llandudno...shan't attempt the Gogogoch!!

Good luck with the training course. As for Tipping Point...surely they'd not do such a thing to a dainty little lady like you!!

Regards x
Thanks Shiraz

Well... I managed to get through the day. Still can't believe it has been 4 years.

I did look at buying a flat in Llandudno once. The prices are really, REALLY, good compared to London but then again I think EVERYWHERE on the planet seems cheaper than London for buying. Can't face going back there now (another reason I could never do the Snowdonia climb project even for HDA)

Up early today to go to the course. So far, so good.

We have homework to do as part of it and one of the first assignments was to do a 'Personal Mission Plan' poster. We were told to be as creative as possible.

In amongst other stuff (we are talking A3 paper here) I slotted a couple of poems in the centre. The poems are below:

The Crossroads

Should I take the easy path?
The admin temp or Buying?
And clock up what is left of life,
As passive me, not trying?

It’s fair to say I’ve earned my rest,
I’ve worked for many years.
The office work and carer role,
All brought their share of tears.

Yet in amongst the tears I’ve shed,
Were many times to treasure.
The times receiving gratitude,
Too numerous to measure.

None more so than giving time,
Affording concentration;
To help another person,
In their time of pure frustration.

Reward can come in many forms,
For those in need and needer.
It brings me back to times I miss;
The time I wrote ‘The Reader’

The Reader*

He read the paper avidly,
But as the illness grew,
His reading skills were fading fast,
Nothing they could do.

But rather than admit defeat,
And take pleasure away,
She carried on regardless,
And bought the thing each day.

OK she had to turn the page,
His hands no longer able;
And then she had to fold it right,
To fit his bedside table.

From time to time she’d read aloud,
If struggling so she felt.
The little looks of gratitude;
Her heart would simply melt.


*Taken from the book Curse in Verse and Much More Worse.

No doubt this will have changed by the time people read this post but I'm very please to seee the Kindle book is in the 'Top 100 Paid in Kindle Store' chart again. Not that it is a best seller by any means lol but when people go into those categories (hopefully med students mostly) it means they get exposure to the book.
Quote:
Amazon Bestsellers Rank: #91,404 Paid in Kindle Store (See Top 100 Paid in Kindle Store)
#43 in Books > Health, Family & Lifestyle > Medical & Healthcare Practitioners > Basic Medical Science > Medical Genetics
#63 in Kindle Store > Books > Nonfiction > Professional & Technical > Medicine > Basic Science
As for Tipping Point... I'm getting a feeling you have never actually seen the programme Either that... or you thought I am so tiny I was expecting to be on it as one of the counters in the machine? lol
__________________
I tried.
Trish is offline   Reply With Quote
Old 28-01-15, 10:56 AM   #235
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Curse in Verse - the poetry of HD

Hi Trish

Ah schucks I got confused...I have seen it though, like a fairground game but I was thinking about the one where they catapult failed contestants backwards out of a chair...had visions of you hurtling through the studio like a human cannonball
shiraz is offline   Reply With Quote
Old 01-02-15, 02:55 PM   #236
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by shiraz View Post
Hi Trish

Ah schucks I got confused...I have seen it though, like a fairground game but I was thinking about the one where they catapult failed contestants backwards out of a chair...had visions of you hurtling through the studio like a human cannonball
pmsl

Nahhhhhhh I can't even go on some of the fairground rides where I pass under the 'minimum heght' bar as I am in danger of being thrown out of the chair/ride.

That actually happened years ago (before they went all Health and Safety mad) where one of Steve's mates had to pin me to the pod with his foot to stop me toppling out at the thing turned upside down. happy days.... ish
__________________
I tried.
Trish is offline   Reply With Quote
Old 03-02-15, 11:39 AM   #237
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Curse in Verse - the poetry of HD

Hi Trish

Gosh, I think my name should have been Dinosaur.

I read your pmsl and first thought it said PMS! Felt sorry for you. Then I thought no...pmsl, must mean please make sense love, or poetic musings of Steve's lady.

Looked it up to find pressure at mean sea level. Like wot? Then I discovered it actually means p***'ing myself laughing. So, I consider my job done - I'm like a little ray of sunshine on a cloudy day!!
shiraz is offline   Reply With Quote
Old 09-02-15, 11:09 AM   #238
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Curse in Verse - the poetry of HD

Quote:
Originally Posted by shiraz View Post
Hi Trish

Gosh, I think my name should have been Dinosaur.

I read your pmsl and first thought it said PMS! Felt sorry for you. Then I thought no...pmsl, must mean please make sense love, or poetic musings of Steve's lady.

Looked it up to find pressure at mean sea level. Like wot? Then I discovered it actually means p***'ing myself laughing. So, I consider my job done - I'm like a little ray of sunshine on a cloudy day!!
ROFLMAO

I'm gonna need to get my carpet cleaned soon at this rate. Actually we have laminate where I have my desk which is just as well at times
__________________
I tried.
Trish is offline   Reply With Quote
Old 09-02-15, 11:25 AM   #239
Trish
Approved Member
 
Trish's Avatar
 
Join Date: May 2010
Location: England
Posts: 2,389
Default Re: Curse in Verse - the poetry of HD

Book plug again

I had a lovely review on Facebook the other day. It was posted by Samantha Mae Kathleen

It read

Quote:
I am currently reading your book, A Curse in Verse and Much More Worse, and I would just like to say thank you for writing it. HD has been a huge part in my life for so long and each poem seemed to take the words right out of my mouth. Thank you, thank you, thank you!
Times like that when I feel all the hours, emotional draining and money spent on self publishing was worth it.

The HDA still have 15 copies left on their bookshelf. Apart from in here; twitter and Facebook it's hard to get the word out there to the HD and wider public on my own.

I have done articles for HDA News in the past; copies are taken to the AGM/Family Weekend, the London HD Group; been to a few carer type and DeNDRoN events, been on a local radio show and written direct to lots of people. Anyone have any other ideas/connections it might be worth my trying?

AMAZON LINK

HDA SHOP LINK
__________________
I tried.
Trish is offline   Reply With Quote
Old 10-02-15, 10:02 AM   #240
shiraz
Approved Member
 
shiraz's Avatar
 
Join Date: Oct 2014
Location: Merseyside
Posts: 887
Default Re: Curse in Verse - the poetry of HD

HiDeHi

Sorry about your weemopandbucket moment!

I know medical schools have extensive libraries, university campus bookshops, indeed why not schools, Help the Aged. The lovely Philip Schofield - his breakfast show often features a guest slot with a personal tale to tell - book plug there for sure, huge audience - and nice comfy sofas! Like wise local news shows. I'm guessing you have already contacted bookshops like Waterstones. Oh and private care home businesses, indeed the supermarkets all have book departments and their customers will consist of a myriad of carers and it is after all a book for any carer, it's not just for HD.
shiraz is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is Off
HTML code is Off

Forum Jump


All times are GMT +1. The time now is 08:36 AM.


About the HDA Message Board

A UK-based forum for people whose lives are affected by Huntington's disease and wish to share their experiences with others. Moderated by SHDAs from the HDA, a UK registered charity.

Please Remember

The HDA Message Board is not a substitute for professional advice. Consult a relevant professional before making decisions that could affect you or others.

Donate to HDA


Powered by vBulletin® Version 3.8.5
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Registered Charity No. 296453. Website Content © HDA 2010

HDA